Learning With Our Patients

By Donald Rosenstein, MD

One aspect of the LIVESTRONG Survivorship Center of Excellence Network that I’ve always appreciated is that each Director brings a unique professional and personal perspective to our shared efforts to advance survivorship care.  Between the Network Directors, the LIVESTRONG professional staff, and our colleagues at our home institutions, we have been able to share insights and learn from our various professional disciplines including medical, surgical and radiation oncology; primary care medicine; oncology nursing; epidemiology; psychology, social work and psychiatry; adolescent and young adult oncology; exercise physiology; and nutrition. However, it is the voices of another group of teachers I’d like to highlight in this message: the patients and caregivers who know best what cancer survivorship means and how important it is to improve survivorship programs and research.

The most powerful experiences I have had in this regard have come from caring for parents with advanced cancer and their families. A few years ago, our clinical team at the University of North Carolina at Chapel Hill provided counseling for several women who were living with advanced cancer while parenting their young children.  We got to know these women and their families well and after two mothers died, we wanted to be sure that their husbands and children had appropriate psychosocial support.  Our search was sobering: we found few existing services for their husbands who were newly single parents and simultaneously mourning their wives and helping their children cope without their mothers.  Justin Yopp, PhD and I first met with two fathers and subsequently started the Single Fathers Due to Cancer Program.  This program includes support groups, a website with parenting and grief resources (www.singlefathersduetocancer.org), a detailed online research survey, and an ongoing partnership with the men in the support group who help us teach medical professionals about caring for parents with advanced cancer.

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